The Long Update

The date up top says January 31 ... but that's when I started writing this ... the publishing date is actually Saturday, February 2, 2007

So anyways ... I'm due for another health update. If I can remember everything that's been going on lately ... nothing major, just lots of little things, always trying to put the puzzle together a bit better.

As I mentioned, we haven't been get a whole lot of full nights sleep around here lately. For the last month James has been waking most nights and we've been trying to figure out the cause of these wake-ups. After a week or so we began to notice one pattern, he would usually wake between 10:30pm-12am ... during or shortly after he had a nighttime feed. We began to wonder if this was irritating him in some way, altho it didn't totally make sense since he has his lunch while sleeping (nap time). But slowly this waking up began to get worse and he would wake with a scream, finally one night he had a small seizure, where he was screaming but unresponsive and floppy when picked up. He did not spasm like he has previously and he did not vomit this time, but it took some time to get him oriented and settled again. After this episode we decided to stop his nighttime feeds for a bit. Unfortunately this did not give us a clear answer, altho we did see some change. He no longer awoke screaming, but he would wimper for a little bit and then go back to sleep on his own. So it seemed that the feeding exasparated an underlying problem. With James' diet it is not wise to take him off a feed, since he does not get his protein requirements for the day; in this case he was not even meeting his hydration requirements. We had to slowly put him back on his night time feeds and right away he start waking and needing us to help him settle again.

This nighttime waking began to shift tho, just to cause more confusion and we saw him waking up more often during the middle of the night, usually between 4am to 6am (along with his pattern of 10:30pm to 12am). We also seen another change in the fact that it was not uncommon for him to wake up coughing, which would turn into gagging. At first we thought he had a cold coming on ... but after several nights of this and him being completely fine during the day ... we began to credit this to his lungs. Increasing his puffers did not help any either. (no surprise).

Along with the disrupted nights, we've seen another pattern in James. It seems that every day he gets a low grade fever at some point during the day ... usually late afternoon and evening time. We have been doing vitals on him 4-5 times a day now so we can have a better indication of what his body is doing. His breathing is consistently in the 45-50bpm and once a day we see a low-grade fever. But yet ... he functions and acts completely content and happy.

We decide to track down our pediatrician (who is currently on call at the hospital and does not have clinic, so we couldn't get an appointment) and see if there was anything we could do to help us all get some more sleep. As well, I had still hoped to get some help from her on the upcoming tests they hope to do regarding James' lung issues.

I managed to obtain a bit more information from the lung specialist's receptionist and found out the tests that are so far slated for James. At this time she said they are planning to do a bronchoscopy. This test involves inserting a small tube down into the lungs to look at them and take some mucas and tissue for testing. This test is not the Bronchoalveolar lavage (flushing of the lungs), as the specialist mentioned when we seen him. Later, when speaking to our pediatrician, she said that these two tests can often be combined as one. They also hope to do a High Resolution CT. It is interesting to read what they could all diagnose using this type of scan ... altho I think the main reason they are doing this is to get a better picture of his lungs. As well they plan to do the 24 PH Probe test I previously mentioned - this is when they put a probe with a sensor on it down the back of the throat into the esophagus, just above the stomach. This test is used to measure if a person has reflux. It will be interesting to see how he handles that test ... but then again, the NG tube never bothered him. The last thing the receptionist mentioned is an Upper GI Series. This test requires you to drink a special mixture called barium which helps show the digestive tract on x-rays. After drinking the barium, the patient has a series of x-rays done at various intervals, around 15-30 minutes apart. Marietta has had this test done before. If they require James to drink the barium then they're out of luck: we'll never get that much stuff down him! I spoke to our pediatrician and she said depending on what exactly the specialist is looking for it is possible to do it through his G-tube ... otherwise they may need to put an NG tube in to get it down ... fun, fun!!

So I did manage to get in touch with our pediatrician on Monday. She had not received the lung specialist's dictated notes since they were not posted yet, but she was able to clear a few things up based on what I had managed to get from the receptionist. When listening to what has been going on lately and evaluating James' wake-up pattern, she began to strongly feel that we may be dealing with a reflux issue that is further irritating James' already sensitive lungs. When sleeping a person becomes relax and this means that if they have reflux they may have food coming back up into their windpipe. James' coughing and gagging would be explained by the fact that when a person feels this happening they would cough in order to clear the lungs of this stomach material. But if he doesn't stop it soon enough or if too much comes up then it can actually end up in his lungs. At the same time, we've had a couple vomitting episodes and this could be that he did not not manage to cough in time to prevent the food from getting into his lungs and when too much got in he ended up vomitting. We could just simply try a reflux medication and see if it would help, but considering all these tests are pending, she thinks we should just wait and see what they say as we can get a clear indication if he has not been on the medication. She said a good indication will come from the PH Probe test and this can be done relatively quickly, so she will look into getting this schedule ... hopefully we can get sleep again soon.

While speaking to her I mentioned that we had had blood work done the week before, some specially ordered by the lung specialist and the others were his routine blood work. She quickly reviewed them, but since she had not completely analyzed them, she could not give a clear evaluation. What she did see was some levels are out of wack, but nothing so obvious to lead to any sort of answers. One thing that did stand out was that his IgG (immunoglobulin) levels were double what they should be. She did not want to speculate at this time what this could mean and wanted to wait until she spoke to the lung specialist to find out what he was looking for before she decided whether we need to have him see someone in Immunology or whether we should just retest after a period of time. I have a follow-up appointment with her next week and hopefully we'll get some more answers and ideas of what's going on by then.

Tuesday we were off to see the Genetic Doctor. He too has some concerns about James' blood results. However, James' ammonia levels were good. This is always the most important thing to look at when it comes to see if James is stable. On the other hand, his Protein levels were high, but they could not give an answer as to why. The high IgG levels could explain part of this. Being dehydrated could also explain this, (recall, we were skipping his night feed). But an important component of the protein levels was not tested, so they could not give a clear idea. Since they were unsure as to the cause of this it was felt that it would be a good idea to do some more blood work ... poor guy. Another reason for this was to have a look at his mineral levels again. The results of his blood work showed that some mineral levels were high and so the dietician was put to work to change James' formula. James has been upgraded from Neocate to Neocate Junior, just the same change as putting a child on formula designed for children over 12 months. He will continue to take his Pro-Phree formula, (this is a protein free formula with your iron, minerals and vitamins), but less then half the amount he was taking before as this was the formula that was throwing out his levels. In order to boost the calories that he needs they have added a new formula called Duocal, a formula containing fats and carbohydrates.

While at the Genetics Doctors we were told that our DNA finally made it across the border in January. We did this blood work last July! In September we were called because there was a hold up at the border ... after much hassle and struggle they finally got it through in January. So we were to expect the results in the next weeks. Wednesday the doctor called us back to tell us they got the results. All this does is confirm that the LPI diagnoses is correct. He did mention that with this in mind he does not think that the testing of James' lungs will tell us anything, as it is "simply" LPI related. But he also understands that it needs to be done, since it is still possible that reflux is taking an extra toll on his lungs.

Last night we went out for the night and came home around 11:30. The babysitter said James slept good. I started up his nighttime feed and a short time later he was crying and moaning again. We stopped his feed and are now once again going to try without feeds at night. This brings concern because we know his blood work was out of wack last time and so we can't short change him on what he gets in a day ... but it's rather hard to get everything in him during the day unless we hook him up continously, an idea that will not go over with James (nor his parent for that matter :). The funny thing is, we can feed him at nap time and he seldom wakes or coughs from that. So confusing!!

On a happier note. Last week James had a dietcian appointment and weighed in at 10.7kg (23lbs 9oz) ... much to our suprise as this was shortly after we had taken him off of nighttime feeds. Although nights can get tiring it is always a blessing to see James as a happy, content, normal two year old during the day. You simply would never guess what a huge medical chart he has just by looking at him.

In the meantime the girls have each taken their turns being sick, Marietta last week with tonsillitis which caused me to cancel my first OB appointment so I could take her in and get some medicine. Just my luck Rebecca was sick this week when I had my rescheduled OB appointment. She had fevers for a few days, first with no sign of anything else and then she began to have sore ears which I hoped she would get over on her own, but by Wednesday night it became apparent she needed to make a visit to the doctor also. My ultrasound was early enough Thursday morning that I left her home with Rob, with the hopes of getting her to the doctor after my ultrasound and before my actual OB appointment. But then they bumped up my appointment, so Rob ended up taking Rebecca and James with him on the bus and meeting me at the hospital. The kids love going on the city bus (this was Jame's first time, he just sat there and took everything in) so Rebecca survived the trip down, but by time I got her she was a hot, red faced, crying, sick little girl. She managed to sit through my Dietician appointment (which they added on to my OB appointment after reveiwing my blood sugar levels) with tears running down her cheeks. We got her home and in bed and took her to the doctor after a long nap. The doctor never specified exactly what she had, besides a very red throat, tongue and cheeks (she called it the strawberry tongue, whatever that means) and both ears infected. A prescription of Amoxicillin and we were on our way ... only to have her break out in a itchy red rash all over body after taking the medicine. So yesterday we finally got another prescription for her and she's on the mend now.

My OB appointment went fine. The ultrasound showed everything is good, blood pressure was fine ... nothing to worry about ... not that I expected there to be. They were concerned about my blood sugar levels, (should have left the book at home then they would never have known :) and sent me off to see the dietician. They have a completely different approach her then when I was in London. In London they declared I had Gestational Diabetes, went over a diet I should follow and that was it. No blood sugar tests, follow up blood work or even followup dietician appointments ... just checked the urine before each visit. Here they said I could leave my diet for now, cutting out the obvious sugar items like cakes and treats and all those yummy things. My levels were too high after fasting (first thing in the morning), which I know is because I eat all evening long. They mentioned they'd like to see my daytime ones come down a bit, but according to my records they're in a fine area. Here they also find it necessary to prick yourself 3 times a day and monitor your levels. When they found out that I had no money for that kind of stuff they supplied me with yet another new machine and some sample strips and declared I could just do the pricking 3 days of the week. Even so, the strips they gave would only last me a few weeks. As much as I like my sugar ... it will be cheaper for me to be stricter on my diet and forgot the constant testing. I believe they are concerned because these higher levels are showing up early in the pregnancy.

So phew ... big long update is done. It's much easier to stay on top of this and do "short" (if you can call them that :) updates!!